A difficult question? Certainly; and for most of us who have been caring for a disabled and/or sick loved one, an emotional and unsettling one to consider. I am not referring to people in their final stages of life or who suffer from conditions that spark uncontrollable actions. I am writing for those whose loved one continues to live indefinitely with no assistance from machines or other specialized medical care. In such a situation, there can come a time when living at home becomes unsafe, especially when the primary caregiver (usually a spouse or parent) is aging and has physical and/or medical limitations of his or her own.  There are many factors involved and regardless of the ultimate decision, there will be feelings of guilt from first consideration to final outcome.  I am currently wrestling with this question daily—sometimes hourly. For me, it boils down to a case of survival.  But whose, my husband’s or mine?

Here is the situation: My husband suffers from a progressive brain condition caused by cancer treatments twelve years ago.  The symptoms mirror multiple sclerosis.  He cannot walk, transfer alone or hear without hearing aids, and he has difficulty swallowing.  I must bathe him, clean his teeth, care for our house, and work for my medical insurance. He suffers recurrent bladder infections, memory lapses, and randomly vomits. He needs total care, but not constant supervision.  And he will never get better, only worse; or at best, plateau.

I can honestly say that I am burned-out in both body and mind. Physically, I have fallen with him, had my right elbow wrenched enough to develop tendonitis, and am plagued with neck strains that trigger migraines—all from helping my husband get out of and into bed, into/out of the car, up/down steps and ramps, with or without a gait belt or slide board.  Mentally, I am exhausted having to anticipate his physical needs, entertaining him, trying to figure out what he can (or will) eat so he doesn’t choke, and checking on him to see if he’s alive. I am hyper-aroused by the sound of his pager alarm that summons me when he needs something.  I have to hire someone to stay with my husband if I want to leave the house for a meeting, lunch date, or extended errant running.  I no longer accept party invitations because at twenty dollars per hour for a caregiver, I can’t afford it.  His sporadic health crises have caused me to cancel plans so often that I dropped out of church, friendships, visits with my family (I have a 93-year-old father who lives 400 miles away and can run circles around my husband) and can now not even remember how to enjoy myself.  I have fallen victim to depression and resentment, and I hate this.  I have two choices: keep him at home and keep the status quo or send him to a care facility—which is the equivalent of getting rid of him—and regain some sense of self.

Something has to change and so I offer my thoughts on why I ought to send him to a care facility versus keeping him at home. Yours may be different.  I won’t consider the financial aspect, only the rational versus emotional elements of such a decision. The reasons I tell myself and others in my situation why I should send him to live elsewhere include:

1. He is too heavy for me to care for without risking further injury to him and myself.
   
2. Caring for him has caused me increasing stress and mental damage over the years.
3. Being burned out has made my care for him sloppy and filled with unkind comments.
4. He would be safer living someplace where there are many people available to assist him, especially if he falls.
5. He could have more social interaction with others in his general condition.
6. I have an obligation to be healthy and available to our children and grandchildren (if I get hurt or sick, they will have no functioning parents).
7. I am entitled to a life.

If I am able to share these rational and compelling reasons with other caregivers, I ought to be willing to listen to them myself.  But I cannot get past the emotions that keep me from acting upon them:

1. How can I kick him out of his own house, his own bed?
   
2. Am I more concerned with his well-being or mine? And whose is more important?
3. He would be horribly upset and lonely.
4. I would feel like I am abandoning him; which in a way, would be true.
5. He would be at the mercy of people who don’t love him, very likely don’t speak English as a first language, and don’t prepare food he is accustomed to eating.
6. The newspapers often run stories of residential and institutional care facilities mistreating their clients.  What if my husband is secretly used for medical experiments? What if he spends hours in a soaked diaper and tied to his bed at night? What if he’s sexually assaulted?
7. What would friends and family do if I send him away? Would they visit him, or forget he’s there?  Would I forget him, too?
8. Would they let him watch the baseball games and NCIS?

Each of these reasons and worries are absolutely real and legitimate, so what good could result from either decision?

First, how does my husband benefit by keeping him home?

a)      He is where he ideally belongs, in a reasonable yet waning emotionally secure environment with familiar people, noises, sounds, smells, and routines. In the house his income paid for. Exactly where I would want to be if it were me.
b)      There will be no language/accent barriers.
c)      I can control everything that happens to him.
d)      I won’t have to travel to see him.
e)      I can give him his favorite foods (yellow cake with chocolate frosting, steak, baked potatoes, spinach, and vanilla ice cream).
f)       I can touch him and tell him I love him as often as I like.

Second, how would I benefit from placing him in a care facility?

1. I would have much more freedom to work late, go to church, go out with friends, wake-up in the morning and not have to take care of my husband’s full bodily needs, do some volunteer work, change jobs, and visit my family.
   
2. My body could start healing, both physically and mentally.
   
3. I could lose the “caregiver” identity and become an individual again.  I could be his wife and respond to him with love, instead of as a burned out laborer increasingly resenting him for it and wishing nature would finish its job far more quickly.
   
4. I could walk into his room with a genuine smile on my face.  I cannot remember the last time I did that. Perhaps this is the saddest part—not finding joy in the man I love.

In proof-reading this article, it screams at me to place him somewhere safe so that I can become a whole, alert, rational and fully functioning adult, wife and parent.  It says if I place him somewhere clean and safe, I can regain the energy I had and greet him with wide smiles and long kisses instead of gritted teeth and averted eyes.  It tells me I haven’t lost the potential to be alive again.  So what keeps me from acting? Guilt. The total helplessness of my husband and his absolute faith and dependence on my love and decision-making abilities places a horrendous unwanted burden on me—a burden tenderly seared into my heart when he looks at me with trust and adoration.  It would be like taking the beloved and loyal family pet to the animal shelter because he is too old and too much work to keep around; you hope the employees or a new family will love him as much as your family does, but fear he will be neglected and left to die sad and all alone in a cage. You know this and take him anyway.

I still can’t make this decision, but I have discussed the eventuality of residential care with my husband so when his memory allows, it won’t be a new concept.  We decided to start looking at places to get a visual in our minds so if the time arrives, we can have an idea where a good fit would be.  Until then, things will remain the same and I will think about this decision each time his call alarm goes off, or I have to dislodge food from his airway, or change the bed linens five minutes before leaving for work, or icing my elbow, missing a meeting...

Janet Ferree is a caregiver for her husband of 32 years.  She works part-time as a technician in a busy orthopedic clinic where she encounters many other caregivers.  She is a member of the hospital ethics committee.

 

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